Who Knew Shopping at Coles was Sooooooo Exciting. AKA How Old People celebrate Valentines Day

Last Tuesday was Valentine's Day. It was also the day of my morning MRI for this tumour? they are concerned about on my T6 vertebrae. I had to fast, no biggie, don't eat much these days anyway. I'm sleeping a lot too, so not getting as much liquid down as I'd like. So there we were, hot day,  MRI done with contrast dye (the only type I can tolerate without making them hit all the pretty lights and bells and whistles - anaphylactic reaction and all that... most tiresome stuff).

Well for the first time in ages, I was peckish, and we needed a couple of things from Coles, so I asked if we could go and have a belated brekky morning tea. I actually enjoyed my toasty sammich, even if I only ate half of it. It was a nice outing for these two old lovebirds... until............

So food was good, shopping was good, nek minut, standing at the checkout, I turned to Rick and said to him "I need to sit", so I did, and he came and looked at me and said "Are you going to make it to the car?   -    Me  "Yep"    Actuality - No she did not. Cue delightful swoon into hubby's arms at the base of the escalators while poor hubby juggles trolley and lovely helpers. I hope they weren't busy that day, would have been a hell of a wait. I could just imagine some safety person instructing the passer bys "Move along, Step over, Nothing to see here"

I woke up in the A & E spent the rest of the day in there, and early evening in CDU (Clinical Decision Unit - where they put you if you are only short stay, or they are still deciding what to do with you)

Got to head homeabout 7.30 - 8pm so at least I got a sleep in my own bed. No real reason except overdoing it and low blood pressure. No exciting Valentines Day, no flowers, but I saved him the packaged bikkies they left with a milo :)

Anyhoo, back to the MRI the tumour on T6 is more like a bit of erosion. This is of big concern to them as we don't want chord compression and turn me into a paraplegic. Turns out this was a big concern for the trial drug too. I had a CT because of extra swelling in the neck of the original cancer. This seems to be the result of previous treatment and we are hoping the lymphatic drainage will help this. What it has done, is show progression to the disease, and this is what we were waiting on to fulfill the requirements of the trial. However, when we got down there (after a long drive in the car- so naturally stiff and sorry and in a bit of pain)  after a chat, and physical examination, It was decided that I actually have progressed too far (so too sick) to participate in the drug trial. The problem is this, clinical trials have to be strict with their rules, and one thing I had to consider, was having another biopsy done and that sample would have to be processed in the UK, and that could take 4 - 6 weeks.

The previous chemo tablets I was taking, clearly weren't working as the progression of the disease even surprised the Oncologist. So I don't have 4 - 6 weeks to sit on my hands and wait. Also my right lung is about 2/3 full of shit, so breathing in air con, laying down, just breathing..... can sometimes be a bit restrictive so I am expecting next week to have to trip into the hospital and have some of that liquid drained.

So where do we go from here. Well, I always believe in having plan's b c d in place, and if they run out there are 22 other letters to plan with.

I've still got natural products to help boost my immune system. As we all know, cancer tricks the body into turning off the immune system, so anything that boosts that, has to help. Also, as I previously mentioned, we have cashed in my super and life insurance. It's given us the financial freedom to pay off the house, pay off debts and do what we want for a while. Well, one thing we can do, is instead of participating in the Keytruda Trial, and be restricted by their timelines and guidelines, we can purchase it ourselves. Given it's still in trial stage, it's obviously not on the PBS and therefore, we are awaiting a quote to purchase from the manufacturing company.

Okay, scuse me while I get up on my soapbox here. Why does it take years, generally 4-6, once a breakthrough is made, to get to those who really need it. I understand the ethics of making sure a drug is working... those of us born in the 60's will no doubt remember the situation that arose out of Thalidomide. But here's where I think all life should be lived with a meaning. So let's take those souls in jail, that are guilty without a shadow of a doubt and subject them to these trials, so that their life has had meaning and not wasted, and those of us needing these drugs can get them faster and not having to pay 10's of 1000's of dollars, basically saving our own life or at the very least, gaining a little more time in the world to see and do things I'm not yet finished with yet.  This particular drug could be the difference of me seeing Easter next year, or me seeing Lilly and James graduate high school.


I had a different chemo infusion today... because... you guessed it,
we are waiting again. Waiting on paperwork!

Till next time!!!!!

Donna

P.S. This blog has been all over the place sorry, blame the steroids
So here's a wrap.

1. I had a new ct because of problems with my neck on the original side of the cancer
2. Because it looked like I had a tumour on one of the vertebrae between the shoulder blades I had to have an MRI
3. After MRI, morning tea and grocery shopping I decided I needed a bex and a good lie down in A & E at the hospital for the rest of the day (HUGE thanks to centre management, other staff, the off duty paramedic and everyone who came to help my husband till the ambulance came
4. I got accepted into a clinical trial... sort of....went to Brisbane to discuss...... I'm too sick now and wont handle their timelines probably. 
5. Sorted that out with plan e and purchasing keytuda ourselves. 
6. First, "new" chemo today back to the usual infusion style, till the Keytruda arrives.
7. "How are you doing really?" I get tired ridiculously fast, if it seems I haven't been myself of late, well we've had dark days, but generally we have, I hope, the worst (meaning paperwork lol) behind us. I feel we have a ducks in a row now, baskets spread out so we aren't placing all hope in one basket. And another thing worrying people is pain. Am I in a lot of pain? I have days that aren't great, but the good thing is, I manage my pain quite okay at this stage. I take panadol osteo 3 times a day, and lyrica morning and night. Warm showers. warm packs and cold packs and massage definitely help. So really, I'm doing okay...... at the pace of a startled snail!